I have lit myself on fire (I'm in a Darwin Awards book), been on stage with Penn & Teller, TV with Super Dave Osborne, scored at Maple Leaf Gardens, "sold" music to Kevin Smith, been in a commercial, and appeared homeless in a rap video. I'm a huge fan of golf, hockey, science, the Oxford comma, and equality. I currently write, create, and eat snacks.

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March 01, 2015

Based on a True Story

Being a writer, especially one without decades of experience under his belt, is always an interesting experience. Every time I sit down at the keyboard to write, edit, or research I come across something new that either challenges me, alters my perspective, or sends me scrambling to the corner in tears. Lately, I've come across something that touched on all three: Non-fiction. Thankfully they were tears of joy and not fear or agony. Now, I have written non-fiction before. It was actually creative non-fiction in the form of a short story titled Losing Vern that was published in the Orange Karen: Tribute to a Warrior anthology. It's a great anthology with all royalties going to another writer, Karen DeLabar, to assist her with some pretty hefty medical bills. You can read all about it here. My contribution was an embellished version of the story of the death of my wife's brother and the few strange days that followed. As I mentioned, it was more creative non-fiction than anything else.

The piece of non-fiction that has me excited to be a writer this week is more of a documentary than anything else. There are no embellishments or creative licenses taken to sensationalize otherwise mundane events. It is not a "how to" or instructional. It's just a story. A true story about real people sharing their true emotions and real experiences. It also happens to be the story of my daughter and how she, my wife, and I navigated through the scary waters of an 11 hour scoliosis surgery as well as the months of agonizing waiting before and agonizing recovery after. One thing I discovered was that this type of story was much easier to outline. I'm smiling as I type that because the outline was pretty much already written. With over 60 blog posts over at our family scoliosis blog over the past 5 months or so all the major plot points are laid out quite nicely. Another thing I discovered was that there will be a lot less dialogue. This frightens me slightly as everything I've written to this point (blog posts excluded) has been quite dialogue heavy. If I were to evaluate my skills as a writer (not comparing them with anyone else) I'd say that near the top of my list would be my ability to write dialogue. In fact, it's the most frequent compliment I get from people who have read Losing Vern (which includes my father the English major, retired educator, and voracious reader who is not known to throw around literary compliments all willy nilly). This story will rely on the power of narrative to keep the reader engaged, which isn't my strong suit. With my fiction novels I sometimes embark on the familiar "show don't tell" struggle, so this will be a good exercise for me. That being said, I open this latest book with dialogue (in some circles this is an egregious no-no). The last thing I discovered is that this book will not be finished for another 11 months. To be fair to myself most of it will be written before the middle of this year, but I wanted to follow the story from diagnosis (March 31, 2014) through to a full year post surgery (January 20, 2016). That leaves quite a bit of story left to tell, but trust me, it's compelling stuff. Any story that contains a war wound like the one my daughter is sporting is worth telling, and worth waiting for.

At this point I think I'll do something I haven't done on the blog before - share an excerpt. Without further ado, here's the opening to my latest work in progress:

Bent But Not Broken

One Family's Journey from Scoliosis Diagnosis to Surgery and Beyond

By:Andrew F. Butters (Dad)

With Contributions From:

Jodi Wilks-Butters (Mom) & Avery Butters (Patient)

"Daddy, so Avery has screws and rods now."

"Yes. Two titanium rods and 27 screws."

"Are they on the outside or the inside?"

"They're on the inside."

"And they had to cut her open to get them in there?"

"Yes, they did."

"They sewed her back up though, right?"

***

Ah, to be able to see the world through the eyes of an 8 year old boy. That was a conversation I had with my son, AJ, two days after his 12 year old sister, Avery, awoke from an 11 hour surgery to correct her scoliosis.

Scoliosis is a lateral curvature of the spine. When viewed from behind, the spine looks like an "S", but the actual deformity is much more complex. It occurs in three dimensions. Avery's spine was bent and twisted like a helix. Left uncorrected the condition would have impacted her internal organs, squeezing them into places they were not meant to be. Digestion would have been impacted and breathing would have become difficult. Her spine would become increasingly deformed, squishing her torso like an accordion. There would have been pain; a whole lot of pain.

What caused it? We don't know. No one knows, not even the doctors. "Idiopathic", they said. Which is just a fancy medical term for, "we don't know".

How did we find out?

How long did you have to wait for surgery?

Was she scared?

Were you scared?

What exactly did they do to fix it?

How long does it take to heal?

Will she be able to do everything she did before?

Will she beep when she goes through airport security?

Those are just a sampling of the questions my wife and I have been asked since we decided to go public with this diagnosis (with Avery's permission, of course). I suggested that my daughter start a journal to capture her experiences and thoughts in an effort to help her process everything. Her mother and my wife, Jodi, immediately went looking on the internet for other people's experiences and didn't quite come up with anything she found particularly useful. There was a lot of medical information, most of it from the United States, and a whack of case studies, but very little in terms of what we as a family or Avery as a patient would be experiencing. So, she stared a blog where we could all contribute and share our perspectives on this life changing event.

To answer the first question, “How did we find out?” we, naturally, have to start at the beginning: with a suspicious mole on our son's neck.

5 comments:

My friend, Amanda encouraged me to check out your blog, particularly the entries about your family's scoliosis journey. My daughter has scoliosis as well and we are currently waiting for an appointment at Sick Kids Hospital. Is there anywhere that I can read more about your family's journey?

There more certainly is! http://scoliosis-journey.blogspot.ca is the blog my wife set up for our daughter and us to jot down our thoughts as we progressed through the journey. Also, please don't hesitate to send me an email if you have questions or just want to talk. I can be reached at potatochipmath@gmail.com. If your daughter wants to talk to my daughter we can arrange that as well.

Thank you, Andrew. I have begun reading the link you attached. Wow! What an amazing journey you've documented. It might take me a while to get through all of the entries. I have a feeling I (and possibly my daughter) will be contacting you as treatment options are discussed. Thanks so much for your reply.

I am addicted to blog comments, so please support my habit and leave me one. I appreciate you taking the time to read and share your thoughts and I will always reply. If for some reason Blogger is giving you grief and you can't leave a comment you can always reach me at potatochipmath [at] gmail [dot] com